Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Everything Fits For Celiac But The Genes

Jennifer Cook-Chrysos

Recommended Posts

Jennifer Cook-Chrysos Newbie
Jennifer Cook-Chrysos
Posted

I was diagnosed with celiac as a child without a biopsy. My three-year old son has high IGA-antigliadin and tTG antibodies by stool analysis, and my father has been diagnosed with Sjogren's disease. Our family picture seems to confirm my celiac diagnosis, except that my son and I have had gene analysis which shows neither of the main two celiac genes. In the books, it always says that you can rule out celiac if you don't have the genes. I am confused, because I want to take a preventative approach with my son (take him off gluten before he has intestinal damage worth biopsying). But is it possible to have celiac without the genes?

Jen

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

yes it is possible to have it without the KNOWN genes, because they have not mapped all of them and there are documented cases of biopsy confirmed celiac without the known genes.

my personal opinion is that gluten is not healthy for anyone, and keeping your family off of gluten is not only healthy, but smart. The gluten free diet can be a very healthy diet when done correctly, and by eating gluten-free, you also usually end up eating less processed food that is not good for you anyway.

Keep your family on a diet of fresh fruits and vegetables, lean meats and fish, alternative grains like Quinoa, and Brown Rice, Buckwheat, Millet, Tapioca, Teff, Potatoes, Legumes, nuts and seeds... there really is a lot of healthy options that are naturally gluten-free and it's just smart.

tarnalberry Community Regular
tarnalberry
Posted

ditto what nini said - the two known genes cover about 95% of current biopsy-diagnosed celiac cases, not all celiac cases in the world. you can still have celiac, or just be gluten intoleranct. follow your gut, pun intended. :-)

Jennifer Cook-Chrysos Newbie
Jennifer Cook-Chrysos
Posted
  • Author

Thanks for your replies. Do you trust the Enterolab stool testing approach? My son also had anticasein antibodies. I didn't. Do you think he needs to go off milk, or could this disappear if he goes off gluten? Is casein sensitivity as dangerous as gluten sensitivity?

Guest nini
Guest nini
Posted

I don't have any personal experience with Enterolab, but the science seems to be pretty sound. A renouned Celiac expert that spoke at our last support group meeting, said that Dr. Kenneth Fine's research and science was sound, and that while the medical community currently doesn't recognize it's validity, she sees that changing.

initially many celiacs are lactose intolerant until the villi heal, some are always intolerant to dairy, that seems to be a personal issue for everyone, seems everyone is different when it comes to that. Although if you think about it, the human body is not designed to digest cows milk. Cows milk is for baby cows and nothing else... there is a reason why mammals wean off of milk after infancy. Sure it tastes good, and I'm not personally willing to give up dairy, but if you think about it, it makes sense that we aren't supposed to consume dairy

mommida Enthusiast
mommida
Posted
Thanks for your replies. Do you trust the Enterolab stool testing approach? My son also had anticasein antibodies. I didn't. Do you think he needs to go off milk, or could this disappear if he goes off gluten? Is casein sensitivity as dangerous as gluten sensitivity?

Take him off casein. That means milk, whey, and the whole casein list.

As far as the gene testing... I supposedly don't have the known genes either, but my biological daughter has both DQ2 and DQ8. We have the same reactions to the same gluten foods. You have to follow your gut reaction on this, and someday science will catch up.

L.

Nancym Enthusiast
Nancym
Posted

If you've been off gluten for 8 months or more even Enterolab might not find the antibodies.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


TCA Contributor
TCA
Posted

I talked to a lady who lives near me who has the same issue. She was diagnosed as a child and doesn't have the gene, but her daughter has celiac and they have the same symptoms. I guess y'all fall in that 5%. Listen to your body!

Mango04 Enthusiast
Mango04
Posted
I was diagnosed with celiac as a child without a biopsy. My three-year old son has high IGA-antigliadin and tTG antibodies by stool analysis, and my father has been diagnosed with Sjogren's disease. Our family picture seems to confirm my celiac diagnosis, except that my son and I have had gene analysis which shows neither of the main two celiac genes. In the books, it always says that you can rule out celiac if you don't have the genes. I am confused, because I want to take a preventative approach with my son (take him off gluten before he has intestinal damage worth biopsying). But is it possible to have celiac without the genes?

Jen

It's very possible to have non-celiac gluten intolerance, in which case a strict gluten-free diet still needs to be followed.

lonewolf Collaborator
lonewolf
Posted

I also have symptoms that point to Celiac, as did my father, but don't have either of the two genes. I know I can't eat gluten, no matter what any gene test tells me, so I stay gluten-free.

key Contributor
key
Posted

My doctor wouldn't even do the gene test on me. HE says that it wouldn't tell you anything, because they haven't identified all the genes for celiac disease. SO just because you don't have the gene doesn't mean you don't have the it. Sounds like you have your answers.

Monica

Jennifer Cook-Chrysos Newbie
Jennifer Cook-Chrysos
Posted
  • Author

Thanks everyone. No, I don't plan to go back to gluten! But I know from experience that it is hard for kids socially to have food issues, so I don't want to take it lightly for my kids. However, if Enterolab can be trusted, it does seem that he does have immune reactions to these foods, and I am just glad we could catch it early before he gets sick.

My pediatrician thinks I am a little loopy because I went to enterolab against the advice of the enterologist she found for me. My son's symptoms were very subtle, and he already had bloodwork that came back negative. But I really believe medicine hasn't caught up with this yet, and most doctors are definitely not thinking in terms of prevention.

Jen

Guest nini
Guest nini
Posted

I have to agree with you 100% that most Dr's are not thinking in terms of prevention. They are only taught to dx Celiac once it's reached the point of severe damage. Why not listen to patients and look for the clues BEFORE it develops into full blown Celiac?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.